Disability Rights Arkansas (DRA) is the agency established by federal law to vigorously advocate for and enforce the legal rights of people with disabilities in Arkansas. We envision a society in which people with disabilities are full and equal members; enjoying the rights of, and opportunities available to, all people. It is in this capacity that DRA respectfully submits the following comments regarding the state’s Home and Community-Based Services Statewide Settings Transition Plan (STP).

General Comments on Statewide Transition Plan

Many of the Division of Developmental Disabilities Services (DDS) and the Division of Aging and Adult Services (DAAS) participants live in their own homes or with family; the state expects these homes to meet the HCBS rules. Although the STP says the waiver/certification staffs charged with making home visits are trained in the HCBS rules, it does not actually say that the HCBS rules have been incorporated into any monitoring tools or that HCBS requirements have been incorporated into trainings for new staff.

The state’s presumption that Adult Family Homes meet the HCBS settings requirement is overbroad because these settings, while “residential,” are still provider-owned or controlled settings. Despite the family-like setting, providers could be making house rules or instituting other restrictions that do not meet the rules. The information in the state plan about these settings is not sufficient to establish that the settings should have such a presumption of compliance. Despite their size, these settings are still owned and operated by service providers and should be treated as such, at least initially.

Recommendations:

HCBS rules should be incorporated into monitoring tools or trainings for DDS and DAAS staff.

The presumption that the Adult Family Homes meet the HCBS requirements needs additional examination.

Comments on the Provider Self-Assessment

The STP identifies some of the non-residential settings, including Adult Day Cares (ADC)/Adult Day Health Cares (ADHC), as isolating residents. However, this information is not later reflected in the discussion of settings which qualify for heightened scrutiny. In terms of the characteristics identified for these settings, the use of restraints or other restrictive interventions without informed consent is particularly concerning and indicative that the setting likely has other institutional characteristics. The same is true for the lack of individual planning or changes to plans based on participant preferences.

In the results summary for the Adult Living Facilities (ALF), some of the information is incomplete in terms of whether a “yes” answer to the question really indicates any community integration. For example, the questions regarding whether there is transportation nearby or if taxis (or information about them) is available is not indicative of whether HCBS participants in that setting are able to use such transportation to leave the setting. Further inquiry into HCBS participants’ actual access to the community is warranted, as the existence of transportation does not mean it is actually available to the individuals. If individuals do not have the financial means to access transportation, community integration must still be facilitated by the provider. The plan regarding validation of compliance and ongoing monitoring should reflect changes to the survey. There is also some concern regarding conclusions in the summary about settings having community features because residents “talk about” community activities, which is very distinct from actual participation.

The survey used by the state to gather information from the beneficiaries themselves is the only one that is administered by a state reviewer. The reviewer not only has his or her own biases that influence how an answer is recorded, the “right” answer is already shaded in. Despite the fact that this is a beneficiary survey, the source of the answer does not have to be an answer given by the individual. Several questions allow the interviewer to substitute information from program documentation describing the services offered by the provider in lieu of an answer from the client, which defeats the purpose of an interview.

There are questions about the justification of rights restrictions in person-centered plans, but no mention is made of whether the rights being restricted are those which can be restricted under the rules. Nor does the survey ask if the rights modification was implemented properly. For example, the right of a person to be in a setting that optimizes individual initiative, autonomy, and independence in making life choices is inherent to a community-based setting. This is not one of the rights that can be restricted or modified through person-centered planning in a provider-owned or controlled setting. The setting must optimize independence for that individual.

DRA is concerned about the intent of the rules being met with regards to individualized opportunities for meaningful integration. The use of person-centered planning to implement rights restrictions conflict with the ideals of autonomy and decision-making. We think this is going to be as much of a culture change for many providers as it will be for the state, and will require strong oversight from the state until the cultural shift has occurred and is firmly settled for all populations served by HCBS.

As the focus of the rule is on the experience of the individual, the state needs to identify a way for individuals to express their opinions about a setting. This is important in the annual person-centered planning process when determining whether the person is receiving services in the most integrated setting appropriate to his or her needs.

We appreciate that the state is planning multiple regional training opportunities for providers, beneficiaries, and advocates, although these discussions may need to continue past the expected time of Fall/Winter 2016-2017. Attendance by program participants is vitally important. This means understanding when and how HCBS participants are most likely to attend and what information and accommodations need to be provided in advance to ensure they have equal and meaningful access.

Recommendations:

Compliance efforts by ADC/ADHC settings need to be closely examined and validated.

On-site visits to other settings should look for institutional qualities that may not have been identified on the surveys.

Plans should optimize personal autonomy and minimize restrictions.

Program documentation should not be substituted for participant responses during the annual person-centered planning process.

Regional training opportunities should incorporate a review of the STP to ensure continued participation.

Remediation

DRA hopes the regional sessions will be the cooperative environment they could be, and that the voices of the beneficiaries and advocates will be shown due consideration given the rules’ focus on participant experience. Although it is not mentioned in the STP, we would request the state advertise these sessions in a manner that will reach HCBS participants and their families and ensure they understand the rules changes and the topics to be discussed, as this is critical to ensuring participation. We appreciate the effort the state is making to ensure ongoing communication about compliance, and we suggest these sessions focus on achieving the necessary cultural shift to enhancing autonomy and decision-making in lieu of paternalistic approaches to care.

We appreciate the requirements of providers to communicate policy changes to beneficiaries and their families.

We appreciate the state’s dedication to site visits for compliance, as we believe this is necessary to ensure appropriate changes have been made. We reiterate our concerns about the beneficiary survey and ask that the state adjust the survey for the compliance visits.

Recommendations:

The state must advertise each regional session in a manner that will effectively reach HCBS participants and their families.

The state should provide some standard language explaining the rules and the coming changes for providers to share with beneficiaries.

The state should flag for review any setting that requires minor changes to policies and thus only merits a desk review, to occur during the next licensure evaluation.

Ongoing Assessment of Settings

We appreciate that the state will review compliance with the HCBS rules during regulatory compliance surveys, but how this will be done is not clear. Beneficiary surveys are a key part of compliance with all the regulations that affect an HCBS setting. We are concerned that there is no mention of training on the rules for compliance personnel or of how the rules are being incorporated into the compliance mechanisms. For example, are the compliance surveyors going to use the entirety of the surveys/systems that the HCBS on-site reviewers have used? An abbreviated version? If so, which pieces are being left out?

Recommendations:

DRA requests the state provide a blueprint for how it intends to incorporate reviewing for compliance with HCBS settings rules into its existing regulatory survey protocol.

Heightened Scrutiny

It would increase transparency and improve the feedback the state receives from stakeholders if the state were to release information about the settings in the state heightened scrutiny process prior to making final determinations and releasing the list for public comment. This would allow stakeholders to offer their experiences or ideas about the settings in question and provide a more complete picture of a setting. The state should consider making use of the small stakeholder group during the heightened scrutiny process.

DRA pleased to see that the state considered proximity to privately-owned institutions, such as Intermediate Care Facilities (ICF) and Developmental Day Treatment Clinic Services (DDTCS) in determining settings identified for heightened scrutiny. We are especially concerned about the settings on the grounds of the Human Development Centers (HDC), as they are unquestionably institutional settings. The evidence should focus not just on how the setting is a community setting, but identify the features that are institutional in nature and how those are compensated for.

Recommendations:

The state should make use of the small stakeholder group during the heightened scrutiny process.

The state should provide full information about the heightened scrutiny settings that meet CMS’ guidance prior to releasing the list for public comment.

Transition of Beneficiaries to Compliant Provider

We think the timing of when individuals will begin changing settings provides sufficient time for compliance to be achieved. We are concerned that the number of settings going through the state heightened scrutiny process may impede some individuals from a true choice of settings, including a non-disability specific setting as is required by the rules. We do not see any provision in the STP for reviewing the current array of settings and identifying where additional capacity needs to be built to ensure compliance with the rules, or to replace settings lost through transition.

Recommendations:

The state should have a provision within the STP for reviewing the current array of settings and identifying additional capacity to be built to ensure compliance.

DAAS Operational Transition

Some people may change multiple settings, such as their day and residential settings. Also concerning is that these changes will be occurring during changes in the system, including providers possibly leaving due to noncompliance. This contracture of the system will likely make it more difficult to find a new setting. In the current environment, 30 days would be a short period of time to identify another proper setting. In this scenario of a noncompliant provider, there will likely be more confusion and additional concerns or questions. Additional time should be allotted to ensure actual due process occurs in which the person understands why a change is occurring and the choices subsequently available to them. Additional time is critical because being close to family, friends and their community is often important to an individual’s well-being, and we are concerned that people may be forced to move further away to receive services if rushed to make decisions. We are also concerned about the continuity of services and allowing time for any additional services to be put in place to prepare an individual for transition and ensure they acclimate well to the new setting. We appreciate the plans regarding transition, including the onsite visit in the 7-10 days prior to transition to ensure services are in place and the in-person visits in the three months after transition, but we believe more time should be allowed for planning and making the transition happen. DAAS providing the language for the notices is a good approach to this situation.

Recommendations:

The notice period should be at least 60 days, and preferably 90 days, to be consistent with DDS.

DDS Operational Transition

DDS providing the language for the notices is a good approach, and we appreciate that at least 90 days is the notice timeline for DDS participants. We remain concerned about the contracture of the system and the lack of alternatives, since there is no mention of the state working to build capacity as compliance efforts reveal settings that will be ineligible to participate as HCBS providers. Our concerns about the DDS process are similar to our concerns about the DAAS process. For both, we question how the state will handle inquiries about withdrawing from HCBS services. We understand the familiar is important to many people, but we are uneasy about any resulting increase in institutional placements.

DRA is also concerned that the state is not planning to increase capacity of non-disability specific settings. Currently the system does not have a significant number of non-disability specific settings, and in order to meet the requirements of the rules, the state needs to use the compliance period to also increase capacity in this area.

Recommendations:

The state should implement safeguards to minimize the incidents of participants relinquishing their wavier services during the transition process.

The state should increase the capacity of non-disability specific settings to meet the requirements of the rule.

Conclusion

DRA feels that careful consideration of these comments will help to strengthen the services available to individuals with disabilities in the state. We remain pleased to have been included in this process, and we urge the state to continue to work with all of the various stakeholders to provide an exemplary system of community settings and supports for all Arkansans with disabilities.

Disability Rights Arkansas (DRA) is the independent, private, nonprofit organization designated by the Governor of Arkansas to implement the federally funded and authorized Protection and Advocacy systems throughout the state. DRA services include information and referral, short-term assistance, technical assistance, legal representation, systemic advocacy, monitoring, and training. DRA services are provided free-of-charge. DRA is independent from state and local government.

Through the leadership of its Governing Board and Advisory Councils, DRA staff provides services to children and adults with disabilities throughout Arkansas. We strive to serve our clients’ expressed wishes.